Engaging longitudinal cohort participants in a research priority setting process for the Raine Study

Abstract

Background: The Raine Study, one of the world’s longest-running multigenerational cohort studies, has consistently engaged participants in shaping specific research projects within the Raine Study. While participant involvement has been integral to study operations, there has not previously been an opportunity for participants to actively help shape the overall research agenda. The Participant Priority Setting Project (the Project) was developed to address this gap, providing a structured process to establish participant-led research priorities that will guide future study directions. Methods: The Project utilised a modified version of the James Lind Alliance (JLA) Priority Setting Partnerships (PSP) Framework to engage Generation 1 (Gen1) and Generation 2 (Gen2) participants in a structured prioritisation process. An online survey was distributed to all active Gen1 and Gen2 participants with an email address on file, to elicit their input on research topics of interest. Responses were analysed and grouped into themes to facilitate discussion. A consensus workshop was then conducted, bringing participants together to refine and rank these themes, ultimately identifying the Top 10 research priorities for the Raine Study. Results: The survey received a total of 535 responses (15.11% response rate), presenting 1,225 unique topics. These topics were consolidated into 44 overarching themes, further refined to a final set of 23 themes to take to the consensus workshop. The consensus workshop facilitated participant-driven decision-making amongst its 23 attendees, resulting in a final list of Top 10 research priorities: Mental Health, Health Education and Intervention, Reproductive Health, Cognitive Behaviour, Generational Impact, Neurodivergence, Sex-Specific Health, Environmental Health, Gastrointestinal Health, and the Socioeconomic Effects on Health. In addition to establishing specific priorities, the process highlighted additional themes warranting future exploration. Conclusion: The project demonstrated the feasibility and importance of incorporating participant input into research agenda setting, reinforcing the value of participant involvement at the Raine Study. By integrating participant-informed priorities, the Raine Study strengthens its commitment to meaningful, participant-driven research that reflects the interests and concerns of its cohort. The outcomes of this project will guide future research planning, ensuring alignment with participant-identified priorities.